Reflecting on the great things to come on this Easter Holiday. I am grateful for the Gospel of Jesus Christ. I can’t wait for that Sunday to come when I will be reunited with my beautiful boy. Days like today make me miss him so much, but also provide such a comfort as I know he will be with us once again.
When your child makes a new friend it is typically a happy time. Rex made a new friend this morning as Oliver Palmer joined him and the other DIPG angels. Ollie fought long and hard and was an inspiration to so many people. He touched more lives than most that live to be 8 times what he did. Please keep Ed and Stacy and Ollie’s siblings in your thoughts as the coming days are especially difficult.
Our buddy Oliver and his family could use your thoughts and prayers. He has shown all of us how brave he is during his 26 month battle with DIPG.
Thought this page needed a picture update.
My wife has been hounding (no exaggeration) me to post on this blog. As I’ve probably said before I don’t want to waste anybody’s time (but am happy to do that on facebook!) and I haven’t felt like I have anything worthwhile to say. So you get some ramblings, or maybe I’ll even piece something together by the time I finish typing.
Monday was MLK day. I’ve been updating my status on facebook with a quote every day this year. The one from Monday struck a chord with me:
Our lives begin to end the day we become silent about things that matter.
- Martin Luther King Jr.
Klark is really big into lists. So here’s a list of “things that matter to me.”
So a little catch up on what has been going on with us over the last couple of months.
The tree at the Festival of Trees was a huge success. It was a hot item and sold the first night at auction (for almost 3x what we spent on it!). Steph took this project on and really hit a home run. Christmas came and went. Anna got some fun stuff but has taken a liking to her wagon. The craziest thing is that the weather has been nice enough that we’ve been able to take it out a few times. She loves feeling like a big girl and going for walks. Speaking of walks, that is now Anna’s preferred method of transportation. After what seemed like forever she just decided one day to go for it. Now we can hardly keep up with her! She is constantly busy and keeps Steph on her toes all day.
I’ve kept busy in my non-working hours by starting yet another business (website selling women’s shoes), a photo blog, playing basketball, working my fitness business, and of course playing with Anna. Not enough hours in the day, but I wouldn’t have it any other way!
If you’ve got this far you deserve some sort of award. No but seriously, thanks for all of your support and may 2012 be the best year yet!
Something pretty neat was brought to my attention today. Freebies 2 Deals is doing a mass donation to Primary Children’s Medical Center (read up here). They are looking for specific items (list here) and we want to get involved. So now I ask if you would like to get involved too?
If you can help in anyway, please do. Here are two ways that you can help:
1. I will accept donations of items on the list. If you want to do the shopping yourself, pick up whatever you want from the list and you can drop it off to me (email stu_35@yahoo.com when you are ready to drop it off). If this route sounds appealing to you, the items must be delivered by December 1.
2. Donate to the PayPal account using the button to the right. I will then do the shopping of items at my discretion. I ask that if you are going to take this route that you do so as soon as possible so that I can get the shopping done. You may notice that there are some high-ticket items being requested (Xbox, controllers, etc). Anything that you can contribute will be put to good use!
I will personally deliver the items on December 2 and I know that everything will be put to good use!
——-DISCLAIMER – this post is likely not for the weak as it contains details (nothing gory, but rather a recollection of Rex’s last hours). Don’t say you weren’t warned———
In some ways it seems like only moments ago. In others it feels like a lifetime. Either way the day has finally come. And now I must write. Not the blah blah that you’ve seen over the past few months, but honesty. Seems like it has been a while, nevertheless here we go.
I’ve read over some of the posts from this time last year. I sound so naive. So full of hope. So hopeless. Is that even possible? It seemed easy to write that we were “prepared” or whatever other word I used to describe. Was I blowing smoke? Perhaps. All I know now is that no matter what I felt then, I wish a million times over to be able to hold Rex. To watch him interact with his little sister. To play with his friends. To hug and kiss his mom. Anything. Is that cliche? This time it is the truth. No matter how much I’ve grown or learned over the past year, nothing can heal this pain and emptiness.
I think back to November 15 of last year. I know that the day was uneventful. I know that he couldn’t swallow and wasn’t very responsive. I remember him sitting in our bed and it seemed that he was staring off into nothing. And although I knew where things were headed, I really had no idea. I remember Steph’s family coming over to see him at night. At this point he didn’t do well with crowds of people so they visited him, in our bed, as small family units while Steph and I entertained in the front room. Each group only took a few minutes, but we heard that he was alert and cognizant of those people around him. I believe he was able to give/receive hugs from the cousins. By the time I got back to him he was pretty much asleep. Little did I know that would be the final opportunity to watch him lay there. I know that I gave him his medication and then went off to write a quick blog entry and then called it a night. This seemed important and the “right” thing to do at the time. Was it? Probably not. Do I have regret? Maybe I do.
The morning started off rough. I don’t recall if Anna slept well or not, and not that it would have mattered to me as I could sleep through nuclear war, but I do know that she was pretty fussy. I think I tried to get some work done, but I know that I sent some emails telling my coworkers that they would likely be covering for me for a period of time. Rex’s breathing was labored. I gave him some morphine to alleviate any pain or discomfort that he might have been having. I remember Steph holding him, rocking him, singing to him on the edge of our bed. Anna was not happy and I was focused on trying to calm her down. We called Steph’s sister to come and take the baby for us so that we could be with our boy. Was it even possible that this was it? Unfortunately (understatement of the year) it was. Rex’s breathes became fewer and farther between. At 11:15, cradled in his mother’s arms he left this world.
So much of those days are a blur to me. Maybe I got some details wrong. If so, please accept my apology. I’m sure Stephanie will let me know and maybe I’ll even edit this post with the corrections.
I am not the same person that I was one year ago. This experience has changed me. Some might say for the good, while others will definitely argue. I’m not sure myself. The roller coaster of ups and downs continues. I believe this ride will be for ever. I hope that it is. I’m afraid that if it stops that I will have forgotten and that is totally unacceptable. That little blonde-haired blue-eyed boy meant the world to me. I sure hope he knows that.
I wish I could possibly say thank you to the countless people that have been there to support us. Whether it was a meal, picking up the Coke I ordered at lunch cause I had to run to a Doctor’s appointment, donating to one of my many fundraiser requests, phone calls, text messages, prayers, or a plethora of other ways we want you to know that we are grateful for what you have done. Many of these things came as a sacrifice and I offer an apology to anyone that missed out on something at our expense. We truly are so unbelievably lucky to have the support system that we do. We could not be semi-functioning members of society today without you. We’ll continue to try and pay it forward, but please note that we appreciate from the bottom of our hearts all that you have done for us.
Please continue to pray for Oliver and Tomas. Both boys are near and dear to our hearts.
Now it is late and I should get some sleep so that I can pretend to be productive at work in a few hours.
Miss you buddy – TO ETERNITY AND BEYOND!
Life gets in the way. It gets in the way of things that we should be doing. For me one of those things is to post on this blog. My wife reminds me every week or so that, “you haven’t blogged for a while.” My response is generally that I don’t have anything to blog about. That, of course, isn’t true and is typically an excuse. Excuses are something that I am quite good at, and always have been (read the first sentence). But seriously things have been pretty busy for us.
Anna celebrated her first birthday last week. We had a small gathering of family for dinner and dessert. I had a friend make the cake, which was crazy delicious (Thanks Roxie!), and Anna seemed to enjoy it too. She dug in like a champ! We had to convince Rex it was okay for him to eat his own cake and it took him about five minutes to understand that and oblige. Anna took a few bites and then reduced the rest of the cake to crumbs which we are still cleaning up. She was showered with gifts and we were glad to spend time with everybody.
Halloween was a few days later. Anna donned a Tinkerbell costume and went to a few houses. She didn’t really know what was going on, but seemed to be interested in all of the people that were dressed up. We took her out for about 45 minutes and then decided to head up to the cemetery to pay a visit to Rex. Steph thought it would be a good idea to give her a whole package of Rolos from her basket – wrong! She somehow soaked the wrapper enough with her slobber to loosen it up and she covered herself with chocolate and caramel.
November is now here. So many memories from last year, yet so much is missing from my brain. It seems that some moments are clear as day while I know there are large blocks of time that I couldn’t tell you a thing about. It has been 355 days since we last hugged and kissed our little boy. In less than two weeks the metric changes to years. I don’t know how we’ve managed to keep going. I can tell you that we aren’t anything special. We don’t have super powers or a sixth sense. We have each other, Anna, and the knowledge that we are all part of a bigger plan. Most of the time this is sufficient to attack the days. On occasion nothing seems to give us strength. I (don’t want to put words/emotions in Steph’s mouth) still find myself sobbing uncontrollably. It happens less frequent than it used to, but when it hits now it seems to do so much harder. Maybe I’ve been living in denial and the truth manifests itself stronger. Perhaps I just miss him more each day. Whatever it is, IT SUCKS!
Enough of the pity party and onto the real important stuff.
Our buddy Oliver received some awful news this week. I’ve said this before, but these are things that no parent should ever have to hear! If you have followed his story at all, or even if you start today, and feel that he has touched you, please read this article and comply with his parents request. I know this is asking a lot of you, but it would mean the world to him and his family.
Tomas has been through some ups and downs over the past little while as well. Please keep him and his family in your thoughts and prayers.
Both of these little boys have taught me what it is like to fight no matter what you are facing. Oliver is nearly 2 years out from diagnosis and Tomas is 20+ months! They are incredible examples of what you can accomplish when you have faith.
Lastly we will be doing a tree at the Festival of Trees this year. If you haven’t ever been to this, and are in Utah, I can’t recommend it enough. It is a thrilling experience to see all of the creativity and hard work that people put into these trees. To top it off, all of the proceeds go to Primary Children’s Medical Center. I have seen way too many posts on facebook from friends that have had to take children there this year. We are lucky, to say the least, to live so close to an amazing facility. Mark you calendars for November 30 – December 3 and head over to the South Town Expo Center.
One of my friends is riding 60 miles for a Make-A-Wish fundraiser two weeks from today. She credits Rex’s story as inspiration. As of right now she is sitting at almost half of her fundraising goal. If anybody is able to contribute to her fund it would be well received. You can donate here.
Thanks Julian, and good luck!
Forget cooking tonight! Go out to Chili’s! They are donating all profits from purchases today to St Jude Children’s Research Hospital.
While you are there color a pepper and pick up the t-shirt!
Send us your pics of peppers at 2eternityandbeyond@gmail.com and we’ll post them both here on the blog as well as on the facebook group.
Details can be found at http://goo.gl/m9IQO. This link takes you to the facebook event page.
Share this with everybody!